Week Forty

Mammy being taken for a ride?

Chapter 21

The results of my recent enquiries are as follows. The discharge coordinator states that Mum should be having her care funded by Social Services, but they are denying receipt of the necessary information regarding the Panel’s decision. He implied some mischief, some delaying tactics and empty pots, but couldn’t give me access to anyone at the PCT or the Panel to speak to. I asked him to find out himself from the PCT if possible.

The Social Worker said he had just come out of a meeting where Avril’s case was being discussed. He complained of aggravation from the NHS due to their lack of understanding about policy and procedure and claims that the NHS have made a mess of this. Apparently there is a common procedure – every case that goes to Panel concludes with a decision that is recorded on a standard proforma. Social Services can then commission the discharge. He thinks there are doubts as to whether the Panel have even met to make a decision, because there is no written evidence of a Panel. He claims that Social Services get charged for ‘delayed discharge’ if they are responsible, but they are not responsible until they have received the Panel’s outcome report. Apparently Sunny Meadows charge over and above the standard care-home rate, so someone will have to pay the difference. This confuses me even more – if NHS recommended Sunny Meadows and that means them having to contribute further to Mum’s care, why are they making it so difficult for each department to get on with it? Social Services won’t be paying any more for Mum than if she went into the cheapest type of home, so…what is the problem? He says there is nothing I can do and he doesn’t know what else to do himself, but he anticipates a speedy resolution. I’m not sure what he’s got up his sleeve… It seems to me that both parties are pointing the finger at the other. Anyway, it’s the twelfth day of Christmas and time to take the decorations down.

***

This is now beginning to feel like a big joke. 10th February and Mum is still in Gold Acre.

Mum was back in her chair, fast asleep and I couldn’t wake her for ages. The nurse told me they had given her a half dose of Lorazepam ‘because of her shakes’. Despite the ‘Cepra’, she seems to be jerking more than ever recently.

Eventually her dinner arrived and she managed to wake enough to open her mouth and eat.

On the last couple of visits I have been disturbed to find Mum lying in her bed in the middle of the day. I know that on previous visits she had been slowly sliding down the chair until her bottom fell off and she landed on the floor. The staff apparently tried all sorts of tricks to keep her upright and said they were going to get advice from the Physio. Anyhow, Mum seemed quite happy in the bed and was very sweet tempered.

After talking to her for some time she suddenly said “I love you!” It was strangely moving and completely unexpected.

Mammy has incredibly good skin – clear, soft and completely unblemished – except for the scars from the fire. Her legs have no hairs, no scars, no veins…mine look like a London A-Z in comparison.

Today she was chuntering away in her semi-comatosed state saying “Yes I know…That’s right..” in a very conciliatory way.

She responded to my funny quips and giggled. I even thought she might get up and dance to ‘Heartbreak Hotel’. That would have been great. I haven’t seen her standing for some weeks now, which makes me sad.

***

Two weeks ago I phoned to prompt the two guys from NHS and Social Services. The man from NHS said he’d ‘been up at Continuing Care’ just that morning and that they (NHS) were accepting responsibility for not informing Social Services properly. He also said that the manager of Sunny Meadows had been off sick and therefore he hadn’t been able to speak to her. Although he said they accepted responsibility for the delay, he then said that “as an organisation (NHS? Gold Acre?) it’s been out of our hands since… well, since it began really.”

The following day Social Services called me back with good news:- The manager in charge has given permission to commission the move on the basis that the NHS had lost the original documents, but all was in order. He had also heard from Sunny Meadows, who had sent a copy of their ‘fees’, which presumably means that they still have a place to offer Mum.

Three hours later I got another call from the same guy in a very different frame of mind. Having looked at the cost of Sunny Meadows, his manager has now decided to dispute it all again and is asking, “Why does she need a ‘Behavioural Management Unit’ when she no longer has behavioural problems”? They now say they will meet her nursing needs, but not ‘fully funded’ at Sunny Meadows. Apparently Sunny Meadows charge about £600 per week for that special unit. I don’t know what they charge in the nursing unit.

What was the point of the whole assessment process then? I am content that Mum is at least settled at Gold Acre and is being reasonably well cared for – certainly better than I could do. But I also know that they cannot keep her there. I had set my heart on Sunny Meadows as a place that could meet Mum’s needs positively, but I wonder what type of home they will say she needs now? Probably the cheapest. I feel quite frustrated and disheartened by it all.

***

On Monday the Social Worker’s Service Organiser asked Sunny Meadows to reassess Mum’s needs to sort out the discrepancies. The Social Worker agrees with me that Mum has had severe behavioural needs and has the potential to present them again, especially in a new setting, with more noise and a probable change of medication. Sunny Meadows had also said that Mum would need the ‘Challenging Behaviour Unit’, rather than the general nursing unit there. So now we await Sunny Meadows’ reassessment and the verdict from Social Services.

My Social Worker said today: “You could write a book on all this!”

“I am doing!” was my reply.

Today I read that “Carers save the UK an estimated £87 billion a year through caring at home, but political parties have not set out how they will support carers in the next government.” ( The Princess Royal Trust for Carers. 11/02/10) I can’t say I am surprised, if homes charge £600 per week.

My Social Worker rang today to confirm that he had had a long chat with the manager at Sunny Meadows and that they are in agreement about something, but I’ve lost track myself. She intends to visit Mum today, report back tomorrow and then resend back to Panel.

***

17th Feb today and progress to report. I had 3 missed messages from Gold Acre and the Social Worker, both asking me to call. I phoned the ward manager at Gold Acre, who informed me that Sunny Meadows had been to reassess Mum, at the Social Worker’s request, and that she agrees that Mum no longer needs a Challenging Behaviour Unit, but that her needs could be met on their other unit – the Nursing Dementia Unit. He said that he was therefore now looking to discharge her. I said I would like to make a couple of calls before discussing this further and he curtly answered that she would be discharged by the end of the week anyway. I was reeling!

I thought it best to phone Sunny Meadows to check the facts there. The manager confirmed that, due to Mum’s deterioration, their Nursing Dementia Unit would now be sufficient to meet Mum’s needs, as she is no longer mobile nor challenging. She said she would be happy to offer her a place there. I managed to remind her that I had found the Nursing Dementia Unit to be extremely noisy. I also said that I was concerned that the reason Mum was no longer mobile was that she has been confined to her room, her chair, her bed and sedatives for so long now – in order to ‘keep her safe’ and manage her behaviour. I shared my worry that Mum would have to stay in her room at Sunny Meadows for the same reasons. I just wanted to cry at how sad it is that she’s like this now. She does not think Mum will relearn to walk, because of the loss of muscle tone and the level of her dementia now. She was very sympathetic and said that she has written in her report that I am concerned about the noise level in the bigger unit – it has 60 beds – and that I might want to consider a smaller home. However she feels confident in their ability to meet Mum’s needs and has every intention of bringing Mum out of her room into the quieter areas during the day.

I don’t feel I have an option to look for anywhere else, as Gold Acre are ready to discharge her this week. She sympathised and said that the ward manager at Gold Acre had been angry about being made to wait so long for this decision. She had told him that I needed to be consulted, but confided that she felt that he seemed to be making his own decisions regardless. She said I must make up my own mind.

I feel very angry that Mum and I are being pushed about like this. Mum is still so young; she should have been encouraged to walk about – been taken for daily walks and allowed to dance…Maybe I should have gone daily to ensure this. I am cross with myself for allowing her to have become immobile and not challenging her care plan more…for not insisting that she be given exercise…I didn’t feel I had the right to question her care though – you don’t argue with Consultants, doctors and nurses, do you?

I spoke through tears to Debbie and her questions echoed mine – Let her go there, where at least she seems to be wanted? Or speak to a solicitor and buy time? Or find somewhere else before the end of the week? She was sympathetic, but the decision and actions will remain mine.

I spoke again to the Social Worker. Yesterday he submitted Sunny Meadows’ reassessment and his own report to the Social Services Panel that commissions these moves. They are meeting on Wednesday and I will therefore hear from him on Thursday. I told him I would be at a funeral on Thursday morning and would want some notice before she was discharged so that I could be there with her. The Social Worker said he was happy with Sunny Meadows’ assessments and was reassured that it was a good safety net, because if Mum’s behaviour does change, she won’t have to go far to be cared for in the ‘Challenging Behaviour Unit’. He said that he trusts the Manager’s judgment, but there is no way of gauging how Mum will respond to the complete change of place, smells, carers and noises. And so I await the decision on Thursday morning.

Week Thirty Nine

Pretty young Mammy with me or Debbie.

Yesterday I took Wendy and Monica to see Mum. I was a bit spaced out though, as I had had some shocking news the day before. My beloved friend ‘Little John’, whom I’ve known since 1985 (23 years) died suddenly in Heidelberg on this remembrance day. I had spoken to him just last week and now he’s dead. I am still in shock and can’t stop crying.

We found Mum slumped in a chair in her room at 10am and all greeted her as she started to whimper. After kisses, cuddles and Monica’s lively banter, everyone relaxed and we remembered people and times past together. Mum continued to cry out spasmodically, but did seem to vaguely engage. Nobody came to Mum’s room until just after 12 noon, when a cleaner walked straight in and was startled by our presence. She fetched us some chairs and shortly afterwards there was a knock on the door and a nurse entered with Mum’s dinner. Well, it was meant to be dinner, but consisted of four dollops of different coloured puree on a plate. I questioned the nurse about it, as Mum has all her own teeth and good ones at that. She said that they had ‘run out of proper food’. My silent question was ‘WHY?’ It’s not like they can’t predict who’ll be there for lunch, is it? I put some green puree with a bit of brown puree on a spoon and tried to feed it to Mum. The spoon was too big and the food was all ‘gloopy’. It took so long to eat and I can’t say that Mum enjoyed it. The sponge and custard, on the other hand, went down like a dream. During the feeding a nurse came in with Mum’s midday dose of tablets. Monica asked and we learned that one was the Trazodone and the other an anti-sickness tablet to counteract some of the other medication. I was struck by the fact that Mum made no attempt at all during those two hours to get out of her chair.

Wendy and Monica were glad to have visited Mum and taken another trip down memory lane together. I learned that Mum and Wendy had been to see Gene Vincent live when they were teenagers and had gone back stage and got an autograph and a kiss from the heart-throb.

I went to put the chairs back in the lounge, which was empty but for two ladies sitting in heavy duty recliner chairs. They are a bit like dentist chairs only more solidly padded and have extra sides and all sorts. I spoke to the shouting lady and stroked her shoulder, offering soothing words of encouragement and immediately she calmed down. I am quite sure they do it for their safety, but these two ladies were strapped in with harnesses like infants in a buggy. What bothered me was that there were no staff around. This lady was so easily placated, but for nearly two hours she had been left alone to cry out.

As I left those rooms to go through the main corridor I spotted four nurses sitting together in the dining room. Another resident approached them and was told to go away as they were having a break. I was getting cross.

As I passed the office I was even more annoyed to see at least six nurses sitting in the office. I appreciate that they may have been doing a ‘hand-over’, having a review, or any other legitimate and worthy business; I also appreciate that the staff need to have breaks during their shifts at work, but surely not all at the same time? To be in an NHS ‘Challenging Behaviour Unit’ with about a dozen members of staff, but nobody willing to meet the needs of the residents was to me quite appalling. Monica and Wendy were also shocked that nobody had come to see Mum except to bring food and medication. It doesn’t seem to be a lack of staff, but something isn’t right!

***

Yesterday Isabelle took me to see the Challenging Behaviour Unit in Cotgrave. It’s not far from Kirk Way, but the ‘Sunny Meadows’ setting is more tranquil, surrounded by pines and countryside. I was very impressed by the ideology of the new senior nurse. He is all for the challenge and for not doping everyone up. They sound very enthusiastic and committed and, as said, they have beds. The manager took us for a tour of the units and I filled out some paperwork. She said that she would do an assessment of Mum within the week.

Later I had a strange call from a nurse at Gold Acre. She said not to worry about anything, but that they had removed Mum’s wedding ring and put it in the safe. She said Mum’s hands had gone all puffy ‘with all the walking around she does’, so they took it off as a precaution and I ‘should collect it’. She also said that Mum had taken a little fall. The doctor had seen her and she was fine, but they had had to sit her down for a while – for her own safety – even though they prefer her to walk about freely… She left me wondering if someone had passed on my concerns about the bucket chair again. I don’t like feeling suspicious about all these things.

***

Mum was warm and smiley today. I talked about family and she seemed to respond with understanding and emotion. A nurse came through to tell me that the manager of Sunny Meadows was in the office doing Mum’s assessment. She came to speak with us and we told Mum she was moving to a nice place in the country. I don’t think she understood, because she doesn’t know where she is now. The manager said they were considering moving her next Wednesday. It feels very sudden, but potentially very good. We don’t even know about funding yet.

***

November 2009. I spoke to the Social Worker this morning to see what he knows about Mum’s move and if there’s any news on the funding issues. He knew nothing about her discharge and was shocked that such a decision could have been made before anyone knows which departments will be paying for Mum’s care. He was equally surprised that Sunny Meadows have accepted Mum without clarification of funding too.

At 11am I got another call from Mum’s nurse at Gold Acre to say that the taxi for Mum has been booked for Wednesday at 10am and could I be there to meet them at Sunny Meadows and help her to settle in. I suppose they will sort the funding details later?

Now a further phone call from Gold Acre to say that Mum’s discharge will have to be delayed until the funding decisions have been made. The right hand doesn’t know what the left hand is doing. Am I surprised? I am disappointed though.

***

On Wednesday, the day Mum was supposed to have moved, I spoke to the Social Worker again and learned that he had ‘stirred things up a bit’ in the department. Other than that he was none the wiser. The NHS and Council process just doesn’t seem to have got its act together somehow.

On the whole Mum is much the same, mostly seeming content, but using less of her capacity and saying very little. She always enjoys hugs and kisses and the occasional massage, but seems half asleep most of the time.

***

It is now the 8th December. I was glad to have been at Little John’s funeral in Heidelberg, to say goodbye and to share some memories with his dear friends.

Today I got a surprise call from the other Nursing Home in Cotgrave – Kirk Way – that had a waiting list of five when I visited in October. They have a spare room. My initial response was to assume that more than five people had died since I visited, but of course that was not the case and I felt rather stupid as they explained that they had gone through the waiting list to find that everyone on it had already secured ‘alternative accommodation’. I too have already found alternative accommodation for my mum, but whether that will still be available when she is finally discharged is anybody’s guess.

***

21st December and Mum is still in Gold Acre.

At 11am I went along to Gold Acre to what I thought was a Carers’ meeting, but turned out to be a Christmas party. The ward manager sat with me making small talk, but also said that the psychiatric nurse, who was present at the original MDM in September, was supposed to have written to me a fortnight ago to explain the final decision and to get Mum sorted. But she hasn’t, and they haven’t, and therefore we can’t.

I went in with Christmas cards, sherry, mince pies and chocolates for Mum. I took a CD of children singing Christmas Carols and she cried with joy. She tried to sing along, but no words came out. Monica came too and we all shared laughter and stories. I am really missing Little John.

***

It’s the 6th January 2010 today. Mum is still in Gold Acre and I’ve heard nothing more about her moving or funding.

Week Thirty-Eight

Mammy and Debbie at Herbert Street…

I went to a friend’s funeral today and have Alf’s to attend next week – I offered to take Monica to Wilford Hill to say goodbye to Alf, her long-standing friend of over 52 years. I’m glad I managed to take them to Newark Market earlier this year. He loved that place.

The Social Worker is back and encouraging me to go ahead and look over a few of these homes. He reiterated how he had found the whole process very difficult.

***

So this week I went along to ‘Sunset Copse’ – it’s in Caythorpe, a sleepy little village next to Lowdham. I must say that I was very impressed right from our first meeting with a member of staff in the car park. The place was welcoming, homely and very enthusiastically and professionally run. I am slightly concerned that Mum would bang in to too many things there, but that is my only concern. I would love her to be in such a homely environment with what looks like a very stable, generous and committed staff. I put Mum’s name down on their waiting list, feeling much more positive again about Mum’s future.

A couple of days later I got a call from the Social Worker to say ‘not putting pressure on you, but…’ apparently he has been given grief about standing up for me in that MDM. I was glad to be able to report my positive experience at ‘Sunset Copse’ and reassured him that I ‘ll go to see the one in Cotgrave next week.

I was disappointed to have a letter from the Gold Acre, saying:

A meeting was set up some weeks ago regarding your mother’s future care. I would like to arrange another meeting for the 6th November 2009 at 10am, with regards to your progress in finding a suitable placement for your mother, as several weeks have now passed…”

It has only been 2 weeks and I do feel they are putting me under too much pressure to find ‘a suitable placement’ for Mum.

Mum is clearly now in the very late stages of whatever dementia she has. She was in one of the lounges at Gold Acre with a few other residents sitting around listening to some soothing pan-pipe music… In came a man announcing a ‘light and sound show’ and it occurred to me that I may never have visited Mum there at that time of a morning, as I’ve never witnessed any entertainment or stimulation. Mum loved the music – a Vera Lyn experience – which you might not expect an ardent rock and roller to enjoy. The nurse was trying to encourage the residents to play percussion instruments and one resident danced with a flag. The result was kind of chaotic, but stimulating and encouraging.

***

Yesterday I had all day out and about. I took Monica to Alf’s funeral at Wilford Hill. The traffic was busy and there were three minutes to go when we stopped to discover that I was heading for the wrong crematorium. Managing to retain a whole string of instructions from a passer by about little bridges, pubs, lefts and rights and roundabouts, we pulled up outside the correct chapel just four minutes late. Monica was pleased to have said goodbye to Alf and I was glad to have been able to help. Then I took Monica home and headed to my next appointment.

It was an ‘Involvement Strategy Group’ for the Nottinghamshire Healthcare NHS Trust. Most of the people around the table (about twenty) were ‘Leads’ representing directorates within Notts Healthcare Trust. A few of us (seven) were ‘carers’ or ‘service users’/’volunteers’. I learned that the Nottinghamshire Healthcare Trust (dealing largely with mental health issues) is distinct from the Nottinghamshire University Hospitals Trust, although both are under the umbrella of the NHS Trust. The discussions and issues raised were very encouraging. I have much to learn about this huge institution and I felt both ‘out of place’ and yet somewhat honoured to have been invited in the first place – like I had gate-crashed a private party. I would like to be involved in influencing and shaping policy decisions – to contribute by offering the perspective of the carer and on behalf of the service user.

***

I should not have gone to see Mum today. I am feeling too emotional myself. This morning I found her slumped over in her chair, looking quite pitiful. I greeted her cheerfully and tried to engage, but she was distressed. She had her eyes shut or half dazed but kept shouting, “No, stop it!” and then she would cry soulfully. I was unable to help her today. They brought her dinner, but she refused to eat more than a couple of mouthfuls. Between sleeping, shouting and crying she was blowing big bubbles through her nose and had a swollen tomato face by the time I left. I think I looked much the same. I am sure we were a sorry sight when the nurse came in with Mum’s medication, saying that the Trazodone should help her. After another hour I went home, having failed again with Mum.

I still haven’t been to see the home in Cotgrave either. If I don’t go tomorrow I will feel under a lot more pressure because we are busy for half-term next week. I also feel stressed because I have done nothing for Conor’s birthday either.

***

Today I got another call from the Social Worker to say that Mum has been awarded Continuing NHS Funding. I need to make sure that they haven’t stipulated a different sort of home for her now.

***

Now I have a letter to say that Mum’s case for NHS Funding has been deferred due to insufficient evidence. This letter was written three days ago and they may have had another meeting since that.

I can’t deal with that until next week now as I’ve got Conor’s party to sort out.

I never quite know how I’ll find Mum, but I think it depends on who I’m looking for. Many days I am so relaxed and happy to be with her that the whole experience is positive and rewarding for us both. Other days I try hard to get no-where and feel frustrated. I think most of it is my problem of attitude rather than hers.

I saw the place in Cotgrave this week. The Deputy explained how they were full (with a waiting list of five since June) and so ‘there was little chance of a place’ for Mum this side of Christmas. I explained that I had been instructed to look around the places recommended, so she passed me over to her ‘Activities Coordinator’ who did an excellent job of showing me around. I was impressed with the space, the set-up and the ratio of active helpers. There were definite quiet places, and it was incredibly calm at this moment in time and space. I put Mum’s name on their list anyway.

***

They were very good at Mum’s routine check-up at the Maxillofacial Unit – not to make us wait too long, then a quick look and ‘fine, see you in six months’. Mum seemed very small and soft and I felt very protective of her.

***

I expected to find the team from last time at today’s review, but found myself in another room with three completely different people. The Ward Manager, who sent me the ‘hurry up’ letter a couple of weeks ago, a senior nurse and a man I recognised from the St Peter’s Wing. The Manager made it clear that the purpose of the meeting was to find out what progress I had made finding somewhere for Mum. I explained where I had been, why, and what conclusions I had drawn. Then I explained my frustration at not knowing quite what to do next. I tried to follow their responses but was hearing such mixed messages. They seem to be saying that the funding will depend on the type of home recommended by the PCT, but nobody knows what that is yet. They emphasised again how theirs is a ‘challenging behaviour unit’ and Mum ‘does not have challenging behaviour’; worse still, ‘as a vulnerable old lady’, they argued that she is possibly at risk by some of their more challenging residents. They said that they can’t just keep Mum until a place becomes available in somewhere of my choice, but that I had to find her somewhere – anywhere – and could move her again later if I so desired. To recap and try to clear my confusion I said it sounds like they want me to find somewhere before I have been told which category of home I am looking for. I began to blubber, which is really annoying when I have a point to make, and asked if they could find out from the PCT what type of home I should be looking for. Then, whilst handing out tissues, they assigned that job to the man who knew Mum in St Peter’s Unit.

I got cross about it all later. One of those days when you feel like everything is left to you. Feeling sorry for myself I managed to recall some wise guy saying “If you want to change the world, you have to start by changing yourself”. (Ghandi?)

The chap at Gold Acre today said that he had spoken to someone in the PCT, but that there was no information yet about funding, although they had apparently already decided at the MDM in September that Mum would need to reside in a home with Registered Mental-Health Nurses. I replied that they had recommended Kirk Way at that first meeting as having a Mental Health Registration. I wrote it in my notes. He argued that it didn’t. I could feel myself becoming frustrated again in a circular conversation and asked him to tell me precisely which homes I should look at. He mentioned two, then heartily recommended another home in Cotgrave, which has a newly developed ‘Mental Health and Challenging Behaviour Unit’ as well as a Registered Dementia unit. He thinks I will like this one, and, more importantly, they have rooms available. I told him I would go next week. I am still getting mixed messages from them – To get her out of Gold Acre they say she doesn’t need a challenging behaviour unit, yet the PCT are saying that IS the type of home I am looking for. Does she need a challenging behaviour unit or not?